Weekly Inspiration: Setting Goals When You Are Chronically Ill

 Happy New Year!

I love the beginning of a new year, with its fresh start and chance to contemplate the year past. I have my own process for looking back and planning for the new year, and once I've gone through that, I'll share my health and wellness related data from 2021 and goals for 2022 with you here.

In the meantime, this seems like the perfect time to share an article I wrote about Setting Goals When You Are Chronically Ill. This article was first published on the ProHealth website on December 30, 2016. I edited and updated it last year to include as a chapter in my book.

Don't worry - this isn't about New Year's resolutions or setting goals to run a marathon or lose 20 pounds. This is a goal-setting process for us, all of us limited by chronic illness and living within a slew of restrictions. We can still improve our lives, in small but meningful ways, by taking baby steps toward our goals. Here's how:

Reprinted from Finding a New Normal Living Your Best Life with Chronic Illness by Suzan Jackson (February 2020):

Setting Goals When You Are Chronically Ill

 

 

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ll around us, we are constantly inundated with stories of resolutions, aspirations, and amazing achievements—from the media as well as family and friends. It is easy to feel left out when you are chronically ill and unable to lose 20 pounds, run a marathon, travel around the world, or do any of the other exciting things you hear others talking about. Being sick doesn’t mean you have to ditch the improvement process, though; it just means you have to adjust your expectations and learn how to set goals that are right for you, at this point in your life.

I was a high achiever (and also a very analytical engineer) before getting ME/CFS. Through work or on my own, I had been through all kinds of self-improvement and goal-setting classes and read a wide range of books: Zig Ziglar, MindMaster, Myers-Briggs Personality Test (I’m an ENFP), 7 Habits of Highly Effective People, and more. I was an expert on getting things done and being productive, and I even taught companies how to set goals and objectives on a larger scale, to make environmental improvements.

During the early years of my illness, I was frustrated as I watched my old goals sit on the sidelines, languishing year after year. At some point, though, I realized I could apply the same goal-setting processes I’d used and taught previously to my new life with chronic illness. My goals would just be different—in some cases, very different, as it turned out!

Following is how I modified those old concepts to come up with a new way to set personal goals for myself that took into consideration my “new normal” of life with ME/CFS. You, too, can use this simple step-by-step process to set your own improvement goals.

 

Step 1: Set Lifetime Goals

This is actually something I learned in the old days, before ME/CFS: to think about what I wanted out of my life long-term and to write down those over-reaching goals. Your lifetime goals might be about your health, relationships, self-fulfillment, profession, passions, etc. These are big-picture things that don’t usually change.

Here are my six lifetime goals:

·      To have strong, fulfilling relationships with family and friends

·      To be a writer, writing about topics that interest me and contributing to my family’s income

·      To travel and spend time outdoors with friends and family, doing activities I enjoy

·      To create and maintain a comfortable, happy, and nurturing home environment

·      To be healthy

·      To be financially stable enough to take care of our family and to reach our long-term goals (which is more of a joint goal with my husband now)

These haven’t changed much since getting sick, except that I added the one about being healthy. When you’re well, it never occurs to you that being healthy is a goal! What has changed is the way that I interpret some of these, given my limitations and needs now. That’s where objectives come in.

 

Step 2: Set Specific Objectives within Each Goal

This is where you begin to get more specific, detailing what objectives would help you to attain your lifetime goals. Think of an objective as something you want to achieve, and remember that goals have more than one objective. When goal-setting, I write down a few objectives under each of my lifetime goals.

For instance, my relationship goal (#1), includes the following objectives:

·      Spend more time with my husband.

·      Have fun with our kids.

·      Spend time with friends.

·      Stay in touch with distant family and friends.

 

My objectives for “Be Healthy” include:

·      Improve my health and my son’s health by trying new treatments.

·      Become more active and improve stamina.

·      Reduce stress and rest more.

·      Make time for myself.

 

Do you see what I mean about chronic illness objectives being different than those for healthy people? One of my key objectives is to rest more! That’s a New Year’s resolution I’ve never heard discussed on the Today Show or read in a self-improvement article.

 

Step 3: Set Measurable Targets to Help You Meet Each Objective

This is the key to success, to help you actually move toward your goals. For each objective, set well-defined, doable (given your health and other life factors), and measurable actions. While my lifetime goals never change and my objectives rarely change, my targets can vary from year to year or even month to month.

For example, consider my objective “reduce stress and rest more.” If I just stopped there, with that vague objective, it is unlikely anything would change. I have deeply ingrained habits that often keep me from listening to my body and resting as much as I need to.

So, my targets last year for “reduce stress and rest more” were:

·      Meditate for at least 10 minutes a day

·      No computer after 7:00 pm

·      Rest when symptoms flare (greater than a 3) (Note: I track my daily symptoms, using a 1–5 scale)

·      Take one “day off” each month with no responsibilities

·      Do two fun things for myself each week (besides TV)

 

See how specific these targets are? They are reasonable targets—small steps—that I think I can truly meet. For instance, meditation experts recommend meditating twice a day for 20 minutes. Since I am trying to establish a new habit, I started with just 10 minutes a day, which is easily measurable and achievable for me. In some cases, your targets will change throughout the year as you achieve them, as situations change, or when you need to further adjust your plans.

These targets are specific to my own needs (and weaknesses). I know that too much time on the computer wears me out, but I am often online almost all day. I go downhill fast at the end of the day, so my target to put the computer away by 7:00 pm ensures I have some restful downtime with my husband every evening—and that helps with my objective to spend more time with him, too!

 

Step 4: Track Progress

For a while, I continued to set my targets in January and forget about them until the end of the year, and then I’d be disappointed I hadn’t met them. It is critical to find a simple way to track your progress. It might take some trial and error to find a process that works for you.

In keeping with my over-analytical tendencies, I use an Excel spreadsheet with all of my targets listed down the left side of the page. I spend five minutes each day jotting down how I did on my targets, then take a quick look at the end of each week and each month. It sounds like a lot, but it is really only a few minutes a day, and this is what works for me. I can see what I’m doing well and what I need to work on.

Another option is to take a quick look at your targets at the end of the day or week and maybe make a few notes in your journal about what to work on next. If you prefer electronic tracking, use an app on your mobile device or computer to track progress. Merely reading your targets daily or weekly will help to keep them fresh in your mind.

 

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Chronic illness and goal-setting are not mutually exclusive. You can still set goals, objectives, and targets and make progress on whatever is important to you in your life. I love the start of a new year and the whole process of setting new objectives and targets for the year ahead. But you can do it at any time—right now, in fact! You can also adjust course however and whenever you need or want, as your health and circumstances change. The keys to success are to focus on your personal needs, desires, and limits and to make your objectives and targets measurable and specific.

Bit by bit, very gradually, I am improving my quality of life in small ways that matter to me and getting closer to achieving those lifetime goals.

Think about what your own lifetime goals are. What are your objectives for achieving those goals? Then set specific targets—those measurable actions you can realistically take—to help meet your objectives and make progress toward your lifetime goals. You, too, can take steps to achieve the life you want.

Movies and TV for the Holidays (or Not!)

Whether you enjoy watching holiday-themed TV and movies at this time of year or are just looking for something warm and uplifting (and not holiday-themed) to watch on a rest day (or a nice, quiet movie night with your family), there are lots of great options.

Holiday Viewing

I'm not much into the modern holiday movie trend, watching Lifetime and Hallmark and other similar movies like so many of my friends do. I tend to prefer the classics. I cry every single Christmas Eve when we watch It's a Wonderful Life, and we decorate cookies with our closest friends (even though our "kids" are now all in their 20's) and then watch How the Grinch Stole Christmas (the original cartoon, with Boris Karloff, of course!) every year at this time. I am always up for a rewatch of Miracle on 34th Street (again, the original) or the newer but just as classic Love, Actually or The Holiday, starring Cameron Diaz, Jude Law, Kate Winslet, and Jack Black in a funny house-swapping romance.

However, I did end up watching two new holiday movies last year at this time, on some sick days. Holidate was a fun romcom, with plenty of humor and a good dose of snark. It's not only about Christmas and New Year's Eve but about all of the holidays, when a man and woman who just met decide to be each other's "holidate" to take the pressure off at gatherings of family and friends. You can check out my review and a trailer here.

My husband and I also watched Happiest Season last year, a new kind of take on the holiday romcom, with an all-star cast. Harper invites her girlfriend, Abby, to come home with her for Christmas and meet her family. The only problem is that her family doesn't know she's gay! Oh, and her father is running for public office on a platform of "family values." There are lots of laughs and farce in this fun movie but also plenty of warmth. We both enjoyed it as a nice, light holiday escape. My review and the trailer are at the link.

I even watched a TV series holiday romcom last year! I was sorting a huge box and a suitcase full of old photos to make a photo book for my father-in-law, so I spread everything out on the family room floor and binged Dash and Lily, a quick 8-episode show that takes place over Christmas and New Year's in New York. The two main characters are young people following clues all over the city (it starts in a bookstore, which of course I loved) until they finally meet in person. The holiday spirit is on full display in one iconic New York scene after another, and it is pure seasonal fun! My full review and the trailer are here.

 

 

Non-Holiday Viewing

If you'd prefer to set all that seasonal stuff aside and just lose yourself in a really good movie or TV series, here are some of our all-time favorites that are fun, funny, warm, and uplifting.

On New Year's Eve last year, my husband and I watched Peanut Butter Falcon, and we both loved everything about it! It's about a 23-year-old man with Down's Syndrome who escapes from the nursing home where he's been living (with some help from an elderly friend) and ends up connecting with a guy on the run for different reasons. It's a funny, heartwarming movie about family, friendship, and healing that left us both smiling from ear to ear. I didn't review it until 2021, so I think it will be my #1 movie of the year! Review and trailer here.

 

Another movie at the start of the year that surprised us was Palmer, starring Justin Timberlake, about an ex-con who ends up caring for the half-abandoned little boy next door who likes dolls and pretty things. It's another odd couple story, but an entirely different one. It had us both laughing out loud and crying--highly recommended. Review and trailer here.

 

One more heartwarming, funny movie that I absolutely loved was Hello, My Name Is Doris, starring Sally Field. She is outstanding in this role as an older, eccentric woman who gets a crush on a young guy in her office and enjoys massive, much-needed changes in her life as a result. I watched it with two friends, and we all loved it. Review and trailer here.

I was just proofreading and ready to post this when I remembered another great movie that will lift your spirits and put a smile on your face! Our top movie of the year in 2020 was Hunt for the Wilderpeople. It's actually another "odd couple" sort of story but totally unique. In New Zealand, an overweight aboriginal teen boy, Ricky, is taken in by foster parents. He's used to being abandoned and unwanted, but a series of events and a tragedy lead to Ricky going on the run in the outback with Hec, his foster "uncle." This movie is hilarious, action-packed, and full of heart, too. It really has everything.

And, you can always check my Movies tab for lots more reviews of movies in a wide variety of genres, for whatever you're in the mood for!

 

Here are a few TV recommendations if you want to really get immersed in a fabulous story with wonderful characters. Again, reviews and trailers and where to watch at the links.

Like the rest of the world, we loved The Queen's Gambit. It's an amazing story with an excellent cast but also so much fun to watch, with the bright colors, fashions, and decor of the 60's and 70's.

My husband and I also become totally absorbed by Veronica Mars, starring Kristen Bell. This teen detective show has plenty of suspense and action but also has a sense of humor, amidst its darkness. You can watch the original first two seasons, a movie, and a final, third season (set 10 years after the end of season two) that they made because of demand from fans.

Similarly, Only Murders in the Building is a newer show that also combines murder, suspense, and humor, with an outstanding cast. We can't wait for season two!

I just finished watching Maid, and it blew me away! Based on a true story of a young mother who suddenly finds herself (and her adorable daughter) homeless, it is raw and powerful but also warm and uplifting, with excellent acting.

And if you want something a little lighter, I also just finished watching The Big Leap, which is a fictional show about a reality dance competition. There is plenty of drama here behind the scenes with the contestants (and the show's crew), but every episode includes heart-soaring dance scenes to leave you feeling good.

You can find many more TV reviews, in all genres under my TV Reviews tab.

I hope you enjoy a relaxing, low-stress holiday week with plenty of downtime!

Weekly Inspiration: Chronic Illness Holiday Tips and Support (and Fun!)

You may have noticed I haven't been writing many blog posts lately--I have been seriously overwhelmed. Besides the usual holiday craziness this time of year, we had a family funeral in Buffalo (an 8-hour drive each way) the week before Thanksgiving, our Thanksgiving trip to Rochester (another 8 hours each way), plus a feature article due to an editor in December, and today, a book signing at a wonderful indie bookstore two hours' away at the beach. That was actually a lot of fun today, and I made some new connections, met other people with chronic illnesses (and sold a few books), but it's just been super busy for me. We did manage to get our tree up last week! So, I've had very little time for blogging.

Then I realized I don't have to write anything new because there are so many wonderful holiday-themed posts out there, written by other bloggers! So, here's a great collection of blog posts, including some excellent advice and helpful tips for managing (and enjoying) the holiday season ... and some laughs and fun, too! These are all from others with chronic illness whose blogs and other writings I enjoy. I hope you do, too!

First, my own article (and a chapter in my book), Managing Family Relationships--Holidays and Beyond. I often find this to be the most challenging aspect of the season for me and the practices I outline in this article have helped me. I hope they help you, too.

 

Toni Bernhard, a good friend of mine who got ME/CFS about the same time that I did, has written three outstanding books on living with chronic illness (check out my reviews in my 5 Inspiring Books post) and writes a regular column, Turning Straw into Gold, about living with chronic illness for Psychology Today. In this column, Surviving the Holidays When You're Chronically Ill, Toni offers several excellent tips for managing the holiday season, including family, gifts, cooking, expectations, and more. As usual, Toni is incredibly insightful and ... well, brilliant! In fact, my husband and I just took one of her tips to heart this weekend, dumped our plans for a huge turkey dinner for Christmas and opted for something much simpler with a lot less work--we are both less stressed now and actually looking forward to the day!

 

Over at Navigating the Storms: Thriving in the Midst of Disabilities blog, she has a helpful holiday post, Let's Use Planning to Make a Beautiful Christmas! She provides step-by-step ideas for planning ahead to manage the season even with limitations, so you and your family can still enjoy the holidays together, with less stress and fatigue.

 

Sheryl at A Chronic Voice blog has put together a comprehensive post, 3 Important Holiday Checklists for Those with Chronic Illness (and Their Supporters) that is chock-full of great advice! Sheryl has checklists for pre-holiday preparation, self-care during the holidays, and what your supporters can do to help, all focused on those of us living with limitations who may struggle during this hectic time of year. This post is loaded with great tips and advice.

 

On the blog My Medical Musings: A Life of Love, Laughter, Faith and Hope, she has a wonderful new holiday post, Have Yourself a Merry Little "Chronic" Christmas. This thoughtful and insightful post includes plenty of practical tips and helpful advice, but it is also kind and supportive, offering emotional support to those of us who probably can't do all that we want to but who still want to enjoy the holidays.

And, now for some fun! Rebecca at Strength and Sunshine blog has a recipe for Peppermint Bark Popcorn ... and it's gluten-free and can be made vegan! It uses only 5 ingredients, takes just 10 minutes to make, and looks delicious. Sounds like the perfect treat for many of us with chronic illness. (Note that many brands of chocolate chips contain dairy. We love Enjoy Life brand of dairy-free chocolate chips.) Mmmm ... we might have to try this one--perfect for a holiday movie night!

 

Finally, with all the holiday stress, you might need a few laughs! Miss Diagnoses: Life with Multiple Ailments has a fun post full of cartoons about If Santa Had Brain Fog. She's a talented cartoonist and has come up with a whole series of funny vignettes about poor Santa dealing with the effects of brain fog as he makes his rounds. Check it out and enjoy some Ho-Ho-Ho's for yourself!

I hope you enjoyed these wonderful blog posts and articles as much as I did!

Enjoy the holiday season!

Book Signing in Rehoboth Beach, DE

I'm happy to announce I will be doing a book signing this month, on Sunday, December 19 from 9-11 am at Browseabout Books in Rehoboth Beach, Delaware. We love both the town and the great independent bookstore, so I'm looking forward to this!

If you are in the area and able to manage an outing, stop by to say hello!

And if you want more information on my book, Finding a New Normal: Living Your Best Life with Chronic Illness, this page has all the details, including a summary, review excerpts, and links to order it. It is available everywhere, in bookstores, online, and in all e-book formats.

TV Tuesday: Maid

My husband went on a rare business trip last month, so I started a just-for-me show I'd been dying to watch: Maid on Netflix, a limited series based on the best-selling memoir of the same name by Stephanie Land. It more than lived up to the rave reviews I've been hearing. I finished it today with tears in my eyes and a smile on my face.

Twenty-eight-year-old Alex is smart and has a bright future ahead: she's been accepted to the writing program at University of Montana at Missoula. But a casual relationship turns into an unplanned pregnancy, and soon Alex finds herself trapped in a trailer with Sean and their young daughter, Maddy. Alex loves Maddy with all her heart and loves being her mother, but Sean drinks heavily every night and often loses his temper. He's never actually hurt Alex or Maddy, but the night that he throws a glass bowl and narrowly misses Alex's head, she realizes they are in danger. She and Maddy leave in the middle of the night, and Alex is determined not to return. She soon finds, though, that life is extremely difficult for a young single mother on her own. She enters the impossibly complex web of government programs that sound good in theory but don't work in practice. She needs a job to qualify for aid, but she can't get a job without an address. A home for victims of domestic violence is their saving grace, run by a kind, older woman named Denise, though they spend some nights in their car and one awful night on the floor of the ferry terminal. Alex is determined to find a job and gets hired by a cleaning service but must provide her own cleaning supplies, which uses up every penny of the meager cash she has. She also needs to find care for Maddy while she works. She spends her days cleaning the homes of wealthy couples and families who treat her like a non-person. In addition, Alex is estranged from her father, and her mother has untreated bipolar disorder; Alex has been taking care of her since she was six years old. Alex endures challenge after challenge, and just when things seem stable, something else happens to pull the rug out from under her. But she is determined to not only make a life for her herself but to protect her beloved daughter, too.

Wow. This show is so wonderful. It's a moving, powerful story made all the more impactful by the fact that it's based on a true story. The casting is perfect, with Margaret Qualley playing Alex, and Andie MacDowell (her real-life mother) as her unstable mother, Paula. Those two, and the rest of the cast, are outstanding in their roles, as is little Rylea Nevaeh Whittet as Maddy. The relationship between Alex and Maddy is heart-warming and feels authentic. The gorgeous setting, on the Washington coast and nearby islands, provides a beautiful backdrop for this often raw story of survival. There are moments of despair, countered by moments of victory, and I was rooting for Alex every step of the way. Alex and Paula and Maddy feel real to me, and their story is poignant, heart-breaking, and ultimately triumphant. It's made all the more powerful by the understanding that Alex's story is the story of so many other abused women and single mothers struggling to survive.

Maid is a Netflix exclusive.

Giving Tuesday 2021 - Multiply Your Donations!

Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday & Cyber Monday. Every little bit counts, even if it's only $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did several years ago with OMF (see below) so that $5 is automatically donated from me each month - I don't have to think about it or do anything else, and my donation adds up to $60 a year! It only takes a few minutes to either donate or set up recurring donations.

And there are some amazing deals in place right now that will double or even triple your donation, turning $10 into $20 or $30!

Where to Donate:

Here are some wonderful places to donate to support ME/CFS research and patient support & advocacy--all are doing wonderful work and the first three are the top ME/CFS research organizations in the world, funding or conducting the bulk of the scientific research today:

• Open Medicine Foundation - #TripleGivingTuesdayOMF - today is the final day of this ambitious fundraising goal, and every donation is TRIPLED! It's a great opportunity to make your money go farther! The campaign has been going on since October 19, and they are cloe to meeting their goal of $1.5 million, which will all go toward scientific research into causes, treatments, and cures for ME/CFS. You can read about their End ME/CFS Project here.
  
• Solve ME/CFS Initiative - the Solve ME $1 Million Challenge - Members of the Solve ME Board have pledged to match up to $500,000 in donations. It runs through December 31. This organization does a lot of work in both ME/CFS research and advocacy! You can read their latest newsletter here and read more about the research this organization is supporting here.
  
• Simmaron Research - donate through their website and you can read all about their research projects here.
• #MEAction - this organization is focused on advocacy and outreach rather than on research, but they are doing some amazing work with patients, communities, and governments! For instance, gaining Congressional support in the U.S. is absolutely essential to increasing research funding. Read more about them here, their home page includes ways that anyone can help and take action, and you can donate to their #MEAction's Giving Adventure. They are about halfway to their goal of $100,000 by the end of December.
  
• ME Association - Big Give Christmas Challenge runs from today through Tuesday, December 7, with a goal of raising 40,000 pounds. This is a UK-based organization that is focused on patient support and advocacy, as well as some research. Here's more about the organization and what they do, plus their current research projects.
• Emerge - the primary ME/CFS association in Australia that provides research and patient support and advocacy. They are now also helping to support the brand-new branch of Open Medicine Foundation - Australia. You can donate on their website at the link.

Host Your Own Fundraiser:

To have an even bigger impact on these organizations, you can host a Fundraiser on Facebook. For Giving Tuesday, Facebook has pledged to match up to $8 million dollars in donations! I have hosted fundraisers on Facebook for my birthday, and it's very simple to set up. Just go to the Facebook Fundraisers page and click on "Select Nonprofit" (all of the ones listed above are available), then follow the steps. You set your own fundraising goals, share your fundraiser with Facebook friends, and then Facebook will double whatever donations you bring in! More info on how it works and the matching gift today here.

Donate While Shopping:
And remember - especially this time of year - to make your shopping work for you with automatic donations to your favorite ME/CFS charity every time you shop!  

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. To show you how well this works, my iGive page currently shows that I have selected Solve ME/CFS as my cause, that I have personally earned and donated $293.44 to them, and that they have earned a total of $6527.70 from all supporters! Isn't that amazing? Over $6500 just from clicking a button before we shop online.

Amazon is not a part of either program listed above but has its own charitable donation program: AmazonSmile. Just sign up and choose your charity (most of those listed above are options). My quarterly report from AmazonSmile from September 2021 says they sent a payment of $1387 to Solve ME/CFS for the quarter and that to date, the organization has received $16,936 from AmazonSmile! I added more to that yesterday. These shopping links really pay off, with almost no effort and no cost to you.

With so many painless ways to give, we can all help to move ME/CFS research forward and support patients!

Weekly Inspiration: Managing the Holidays

We are getting ready for a long road trip to my hometown, Rochester NY, for the first time in 2 1/2 years to spend Thanksgiving with my extended family. I am very excited to see everyone again and be reunited, but I am also worried and anxious about caring for myself away from home, the exhausting effects of all that social interaction, and being with certain family members who refuse to even acknowledge my illness, let alone be supportive. To be honest, my stomach has been in knots the past few days thinking about encountering these people (to be clear, most of my family is kind and supportive). And now I have a new concern, worrying about leaving my father-in-law in his assisted living facility for a few days without us being able to visit, as his dementia continues to worsen.

So ... yay, holidays!

I know I will enjoy our visits, and it will be wonderful to see my family again, but this time of year does present some unique challenges for those of us with chronic illness.

I wrote an article for the ProHealth website, which I reprinted here on the blog (and adapted for my book), Managing Family Relationships During the Holidays ... and Beyond. You can read the full text of the original article at that link.

I just re-read it yet again, and it's a good reminder for me, even after so many years. I think my relapse/worsening since March 2020 has increased my anxiety levels quite a bit, but whatever the cause, I was a lot more accepting and zen back when I first wrote this article!

So, I relearned some hard lessons, and I hope you also get some helpful tips from this article.

Happy Thanksgiving!

Weekly Inspiration: Finding Joy in Every Day

For this week's living with chronic illness inspiration, I have a new video, Finding Joy in Every Day, on my YouTube channel. It's adapted from a chapter in my book, Finding a New Normal: Living Your Best Life with Chronic Illness, and discusses some simple habits that can help you to identify the small joys in your everyday life and create more of those moments, to improve your quality of life and happiness. These simple steps have really helped me.

 

 

I don't know about you, but this is a very stressful time of year for me, plus we've had extra stresses caring for my elderly father-in-law and going to an out-of-town family funeral. More than ever, I need to recognize the small moments of joy in every day, learn to see them and make more of them, and make time for myself.

I hope you find this video helpful.

What everyday moments bring YOU joy?

Tell me in the comments below.

You can also connect with me on Twitter and on this blog's Facebook page. There are kind and supportive chronic illness communities in both places. Connecting with others like me brings me joy!

Chronic Illness Caregivers

Did you know that every November is National Caregivers Month? I wanted to acknowledge it and share some resources because so many of us living with chronic illness either have family caregivers helpings us or are caregivers ourselves. And some of us (like me!) fall into both categories.

There are some general resources, including tips, community, and more, available for all kinds of caregivers through the Caregiver Action Network. They also include graphics and tags for sharing on social media, to help connect with other caregivers.

For those specifically dealing with ME/CFS, either in themselves or those they care for, there are several excellent resources.

Solve ME has Resources for People with M.E. and Caregivers, including lots of great information on symptoms, post-exertional malaise, applying for disability, finances, finding a doctor, and more.

#ME Action has a whole set of resources specifically focused on caregivers, including a Facebook group for support, a newsletter, and periodic virtual meet-ups for caregivers.

American ME and CFS Society also offers a long list of tips, plus additional resources for caregivers of those with ME/CFS.

I also have resources for caregivers. My book, Finding a New Normal: Living Your Best Life with Chronic Illness, includes chapters on When Your Child Is Chronically Ill and Coming of Age with Chronic Illness, plus the entire book is helpful for caregivers in not only understanding what their loved ones are going through but also practical ideas on offering emotional support.

Ten years ago, I started a Facebook group, Parents of Kids & Teens with ME/CFS and Related Illnesses, which is now being managed by several other wonderful parents. It's a warm and compassionate group of parents from all over the world (1600+ now), but it is also an amazing collection of experience and knowledge, with parents helping parents with treatments, finding doctors, and school issues, as well as offering each other emotional support. To join, just follow the link, click the Join button and answer the questions (adult caregivers of adult "children" are welcome, too).

 

Finally, if like me, you are both a patient and a caregiver (besides my grown son, I am also helping to care for my elderly father-in-law with dementia), check out my video presentation from this year's Parent + Caregiver Summit, Caring for Others When You Need Care Yourself.

And my own personal tip, gleaned from the experience of my husband and I is ... Give yourself a break! Even if you can only manage an hour or two, find someone to lend a hand (family member, friend, or hire someone) so that you can take some much-needed time off. You won't be able to help your loved one if you are exhausted and stressed yourself. I wrote about this on the blog recently in a Weekly Inspiration post: A Much-Needed Respite.

What are YOUR experiences as a caregiver? Are there resources for caregivers that you recommend or have found helpful? Please share your thoughts, tips, and experiences in the comments below.

Happy National Caregivers Month!

TV Tuesday: The Big Leap

Together, my husband and I watch a lot of TV shows, including many action/thriller types, medical dramas, sci fi, legal dramas, and a few select comedies. But, on the rare occasions when I have some TV time to myself, I most enjoy watching dramas and especially anything that includes singing and/or dancing. So, while my husband was golfing last month, I tried a new show, The Big Leap, a fictional drama about a reality dance show. I was hooked! I have been loving this show, both for its drama and for the wonderful dance scenes in each episode.

Reality TV director Nick Blackburn, played by Scott Foley, has a new show to focus on, and he is determined to make it a hit. It's a dance competition with open auditions, with the ultimate goal of doing a production of Swan Lake with the disparate group of amateur dancers (of all kinds) that are chosen. Former ballerina Monica, played by Mallory Jansen, and dancer/fashion icon Wayne, played by Kevin Daniels, will act as judges and directors of the final production. The contestants who make it onto the show (this is still first episode stuff) are a varied group, from diverse backgrounds and with very different dance styles. Simon and Brittney, played by Adam Kaplan and Anna Grace Barlow, are ballroom dance partners who have won many awards (and have an interesting backstory). Julia, played by Teri Polo, is a married mother of two daughters who feels stuck in her current life and long ago had a dream of being a professional dancer, with some training in classical ballet. Many of the other contestants have less structured dance backgrounds. Paula, played by Piper Perabo, is a breast cancer survivor with some good moves on the dance floor. Mike, played by Jon Rudnitsky, is down on his luck: laid off from his job, recently divorced and still pining for his ex-wife, and drinking way too much. His dancing has mostly been confined to dive bars while drunk. Gabby, played by Simone Recasner, and Justin, played by Raymond Cham, Jr., were best friends in high school, where Gabby was on the school dance team and Justin was known for his breakdancing moves. They both gave up their dreams, though, and Gabby is struggling to raise and support her son on her own, while Justin works at a bowling alley. Other contestants are into hip hop and other contemporary dance styles and from very different backgrounds. To boost ratings, Nick adds a final contestant, NFL player Reggie, played by Ser'Darius Blaine, who is athletic but has no dance experience and recently ruined his career (he was "cancelled"), providing him with good incentive to show his old coach that he's pulled himself together. Together, along with other dancers, these contestants go through various trials and tribulations each week, in both their personal lives and on camera (and sometimes the two collide), while Nick tries to boost ratings with as much drama as possible.

I am just loving this show, in part for the same reasons I have loved shows like Glee and Zoey's Extraordinary Playlist: I've come to care about the characters and root for them, plus the music and dancing in every episode lift my spirits! The dance aspect alone caught my eye when I saw trailers for the show (check out the one below--it still gives me chills). I also spotted Teri Polo in the cast, whom I absolutely loved in The Fosters, another old favorite show. After watching 8 episodes so far, I have come to enjoy all of the cast members, together forming a wonderful ensemble. The writing is clever, with humor woven in, as well as drama. And, of course, there are the dance scenes! Though they are working on Swan Lake, there are plenty of opportunities for each of the characters to indulge in his or her own special form of dance, which is just fun and uplifting to watch. I'm loving this show and looking forward to the next episode ... my husband is golfing tomorrow afternoon!

The Big Leap is a FOX network show, so it is available On Demand, as well as streaming on Hulu.

This trailer leaves me smiling every time!

Weekly Inspiration: Find Your People

When you live with chronic illness, one of the most difficult aspects can be the loneliness and isolation. When you have an invisible illness, like ME/CFS (myalgic encephalomyelitis or chronic fatigue syndrome), fibromyalgia, EDS, Lyme disease, or POTS, you can feel even more isolated, even (or especially) when you are among healthy friends and family. The solution is to find your own group of people who "get it," who understand exactly what your strange life is like because they are living a similar one.

In the almost-20 years since I first became ill with ME/CFS (and later, Lyme), I have found or created my own community of other patients, both online and locally. These various groups are my safe space, my comfort zone. They are where I "go" (even virtually) when I am at my worst and can't manage interaction with healthy people. They are also the people I turn to when I want to share my victories; the only people who can truly understand the exhilaration of a rare social outing or being able to take a short walk without getting sicker.

It all started with this blog, way back in 2007, when I began writing about my own experiences with ME/CFS, just to help process what I was going through (by then, both of our sons had ME/CFS, too). I was surprised and thrilled when others actually read my blog and began to leave comments, sharing their own experiences! Some of those early commenters here on my blog have become close friends over the years.

By 2010, I had met, heard about, or interacted online with a few other parents of sick kids in my local area, so I decided to plan a lunch where we could all meet. This was a life-changing afternoon for all of us and the start of our local support group, which now includes about 40 different families in our region. That first "mom's lunch" led to a family potluck (the start of a tradition), where our husbands and kids met also, and a few other local families joined us. That evening was just as life-changing for the group of sick kids, all isolated and many unable to attend school or play with friends, as it had been for us parents to meet. Since then, our local group has continued meeting several times a year for weekday lunches and weekend potlucks. Besides understanding, support, and the chance to trade advice on treatments, doctors, and school accommodations, we have developed lifelong, cherished friendships. We are now meeting on Zoom for the time being, but those Zoom meetings still provide a wonderful opportunity to bond, support each other, and share information.

Then, in 2011, I wanted to connect even more parents of sick kids (who have some very complicated and challenging roles), so I started the Parents of Kids and Teens with ME/CFS and Related Illnesses group on Facebook. That group has now grown to over 1600 members from all over the world, and I have turned over its daily admin to other parents. But, the group still retains its original focus on kindness, compassion, and support, with parents who are not only understanding of others' situations but who can offer loads of hard-earned experience in all kinds of situations. The collective knowledge of that group is way beyond what most medical professionals can offer!

There are lots of other groups online that I have joined and participate in, too. I list many of them, plus additional resources in New Online Groups for Teens and Parents (and others, too!).

And to find locals in your own area, try posting in an illness group to find others who live locally. You can also ask your doctor (or the school counselor, for kids) to pass along your contact info to other people/families with similar diagnoses.

Finally, you can leave a comment here on my blog or follow me on Twitter, where there is a huge chronic illness community, or "like" this blog's Facebook page, where we have a kind and supportive community growing as well.

I cover all of this in more detail in my book, and I'll end here with one of my favorite quotes that also appears in my book:

"“Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one.” 

        --C.S. Lewis

GET (Exercise) Removed from UK M.E. NICE Guidelines!

Rejoice!! (cue sound of trumpets)

After years of work by patients, doctors, and advocacy groups, the UK's National Institute for Health and Care Excellence (NICE) Guidelines for M.E. have finally removed the harmful recommendation to force ME/CFS patients to exercise. Hurray!!

I haven't been posting here about every step of this arduous process because it's been a long and difficult one. But with much of the rest of the world acknowledging  a few years ago that the original studies that resulted in recommending Graded Exercise Therapy (GET) as a "treatment" for ME/CFS were seriously flawed and the advice debunked, I felt it was only a matter of time before the UK itself came to the same conclusion. It's been a long road, though. Briefly, NICE was ready to release the new guidelines (without exercise included) a couple of months ago and suddenly postponed its publication. Since then, they held stakeholder meetings, hearing from hundreds of ME/CFS patients, doctors, researchers, and advocates (and plenty of medical professionals supporting GET, as well). Thankfully, science won out in the long run.

Here are some highlights of the new guidelines. They:

• Acknowledge that exercise, and specifically Graded Exercise Therapy (GET), can make patients worse.
• Provide advice around energy management instead.
• Downgrade Cognitive Behavioral Therapy (CBT) from a curative "treatment" to a support management tool.
• Include specific recommendations for those with severe ME/CFS and for children and young people.
• Perhaps most stunningly, the document acknowledges the prejudice, disbelief, and stigma that patients have endured for too long.

You can read a more complete summary of the process and the changes in this article from #MEAction. 

From the summaries I have read, I can't tell if the new NICE guidelines actually include any real medical treatments, like treating Orthostatic Intolerance, correcting sleep dysfunction, treating underlying infections, or treating immune dysfunction. The #MEAction summary does note that the section on research leaves out a lot of the latest research on causes, underlying physiology, etc. so I suspect the guidelines do not provide much in the way of specific treatments.

However, ME/CFS patients in the UK will no longer be forced to exercise, and ME/CFS clinics there will be allowed to offer a broader range of services, support ... and hopefully real medical treatments, too. They will no longer be limited by the old NICE guidelines which only allowed GET and CBT.

The impact of this wonderful news is not only confined to the UK, either. Unfortunately, over the past decades, many countries, doctors, and hospitals (including some of the most prestigious medical centers in the U.S., like Mayo and the Cleveland Clinic) have followed the UK's guidelines, so hopefully, this will put a stop to that also. The U.S.'s Centers for Disease Control (CDC) removed recommendations of GET and CBT from its own website guidelines, soon after the data emerged that they were harmful.

This is great news! It came about thanks to the tireless work of many, many people in the UK and beyond who deserve our gratitude. Hopefully, this is the beginning of a huge change in treatment protocols for ME/CFS patients in the UK and beyond.

NOTE: When I refer to "real medical treatments," I'm including many of the treatments that have helped my sons and I to improve our functioning and quality of life and live more active lives again. Read more about these treatments in the tab on this blog, Effective Treatments for ME/CFS.

And for more detailed guidelines on testing and treatments to share with your own doctors, refer to the documents from the U.S. ME/CFS Clinician Coalition, linked to in this post on New ME/CFS Testing and Treatment Guidelines.

TV Tuesday: Only Murders in the Building

Way back in my Summer TV Preview at the start of July, I mentioned a new show I was really looking forward to, even though it wasn't due to start until the end of summer. Only Murders in the Building has a cast of comedy gold, so I had high expectations ... and they were exceeded! My husband and I both enjoyed this murder mystery-comedy-drama and were disappointed when it ended.

In New York, there's a fancy apartment building called The Arconia, whose residents include celebrities and other successful people (to varying degrees). Typically, its residents keep to themselves, but now someone in their building has died, under suspicious circumstances. At first, police determine that Tim Kono's death was a suicide, but it's not that clear-cut. The building is cleared while the police investigate, and three very different residents end up waiting in the same neighborhood restaurant together. They discover that all three of them are serious fans of a particular true-crime podcast, and they end up discussing the ins and outs of that case in depth. Charles, played by Steve Martin, is a somewhat stiff and pompous guy who used to be an actor. In his best-known role, he played a detective on a cop show for years. He vaguely knows his neighbor, Oliver (played by Martin Short), who works as a director of plays in New York. Before the death in their building and their meeting in the restaurant, neither of them knew Mable, played by Selena Gomez, but the three of them quickly bond over their love of the true crime podcast. When they return to the building and begin to find clues suggesting that Tim's death might not have been suicide, they decide to start their own true-crime podcast, Only Murders in the Building, investigating on their own and reporting to their followers. Detective work, suspense, and hijinks ensue!

A TV concept created by Steve Martin and starring himself and Martin Short? With Selena Gomez as their young, much cooler partner? I'm in! This unique show really has it all. It's a murder mystery with plenty of plot twists, surprises, and suspense. It's also very, very funny, with comedy royalty (and best friends) Steve Martin and Martin Short at the helm, with great chemistry with their co-star Selena. And surprisingly, it is also warm and touching, as the three loners begin to get to know each other, eventually reveal their secrets, and develop a real friendship. Other big stars like Nathan Lane appear in the story, too, much to our delight. We just loved everything about this show and enjoyed every episode. Our only complaint? It was over much too soon! But good news: season two is scheduled for release in 2022. We can't wait to see what happens next.

Only Murders in the Building is a Hulu original, so it is available exclusively on Hulu.

Top Ten Posts from the Past Month

It's been another rollercoaster week of highs and lows - whew. After a month-long crash, I finally had a few good days earlier this week! Aches gone and able to be active just in time for our 2-day camping trip. You can see photo and video highlights on my Fall Getaway video. But, yesterday, I hit bottom again - horrible aches and sore throat, out of the blue. Even worse this morning--had to cancel going to see Hamilton with my two closest friends (who I haven't seen in months!). Pretty bummed out but settled into a rest day on the couch.

Since I don't have the energy for a new post today, I thought I'd share the 10 past blog posts that got the most visits this past month. It's a mixture of older, popular treatment posts plus inspirational posts plus recent updates (and one head-scratcher!). My top 10 blog posts this past month:

• Opinions and Editorials on the New Name & Criteria - this is a post from 2015 that is not very relevant anymore, so I have no idea why so many people looked at it this past month! If you're interested in some history, this post describes the "new" name, SEID, for ME/CFS, which never really caught on.
• News from Our House: Ups and Downs - this recent post from last month describes more of my recent rollercoaster struggles with recurring relapses, and what helped, as well as my son's wonderful improvements.
• Heart Rate and Post-Exertional Crashes in ME/CFS - this perennial favorite post, written in 2011 and just updated last year, is all about how heart rate can help you to predict (and prevent) post-exertional crashes, including how to calculate your limits and tips on choosing the right heart rate monitor.
• Treating Yeast Overgrowth/Candida - another popular older post that gets a lot of attention because yeast overgrowth is very common in ME/CFS and related illnesses due to our immune dysfunction--and it can make you feel awful, so treating it often improves many symptoms!
• The October Slide: ME/CFS and Infectious Triggers - popular at this time of year for obvious reasons, this post explains how the immune dysfunction of ME/CFS makes us susceptible to infectious triggers and how to prevent the downward slide that is common in fall and winter.
• Imunovir and Inosine for Treating ME/CFS - closely linked to that last post, inosine helps to normalize the immune system and has had a huge positive impact on my son and I--inexpensive and readily available, it's one of the top treatments that has helped us over the years.
• Increasing Glutathione in ME/CFS and Related Illnesses - again, closely linked to those last two posts, glutathione is essential for energy, detox, and ... healthy immune function. It's another simple, inexpensive treatment that has greatly improved our ability to function and reduced crashes & infections.
• Immune System Abnormalities in ME/CFS - another post that is part of this grouping on treating immune dysfunction, read this one first to better understand how the immune system in ME/CFS is dysfunctional.
• Mast Cell Activation Syndrome (MCAS) and ME/CFS - a different avenue of treatment to consider for ME/CFS and related illnesses, like Lyme disease, POTS, EDS, and fibro. MCAS is very common in these illnesses and is often easy to treat with inexpensive and readily available treatments.
• Weekly Inspiration: A Day in My Life - I made this video to show what a typical day is like in my life with ME/CFS and Lyme. I made it on a day when I was doing pretty well, which was most days until last year when this series of relapses began. I tried to be honest and open and share the realities of my life with chronic illness, including how treatments have helped me.
  

Those were the 10 blog posts most visited here in the past month, so I hope those keep you busy while I work on recovering! 

As always, please share your thoughts and your own experiences in the comments or any questions you might have.

Weekly Inspiration: Rejuvenating Time Outdoors

Hi, all! The blog has been quiet this week because my laptop is at Apple being repaired - AGAIN! For the second time in a year and a half, the display/screen died. Apple products are normally pretty reliable, but I think I got a lemon this time!

So, I am limping along on a 15-year-old MacBook (which, by the way, is still in excellent shape!), using ancient browser software that won't even let me access the YouTube site! So, I am limited, to say the least.

The timing is good, though, because we are heading out today for a much-needed break, a short camping trip to a local park. That means being off-grid for me anyway! And hopefully, when I return, there'll be a message from Apple telling me by laptop is ready to be picked up.

In the meantime, with limited resources (and time), I will share some posts I've previously published on the topic that is foremost in my mind today: spending rejuvenating time outdoors. I wrote exactly what I am thinking about today in this Weekly Inspiration post about a year ago, Outdoor Living. In fact, we had just returned from camping at this same park and in the exact same site we will be on this week! So check out the post, loaded with helpful tips and gorgeous outdoor photos (just looking at photos of nature has been proven to provide mental and physical health benefits!).

Our favorite water-view campsite!

 

The scientific studies proving that are explained in my article, The Restorative Power of Nature, which is reprinted in full in the linked post. That article also includes ideas on how you can enjoy nature, even if you are homebound or bedridden!

I also made a video on the Health Benefits of Spending Time Outdoors, but as I said, I can't access YouTube right now to give you a direct link or include the video here. If you are interested, you can visit my YouTube channel, click on Playlists and then the Chronic Illness Playlist, and you'll find all of my chronic illness videos, including Get Out! about how to spend time outdoors or benefit from nature, regardless of your limitations.

 

So, we're packing up the camper and heading out after my nap! I hope you find a way to enjoy the benefits of nature this week, too!

Weekly Inspiration: A Day in My Life

I finally finished editing and uploaded my own Day in the Life with Chronic Illness video, showing you a glimpse into my life with ME/CFS, Lyme disease, and OI (POTS and NMH).

As I mentioned in a recent Weekly Inspiration post, I enjoy watching chronic illness "slice of life" videos on YouTube. These are the videos that provide a glimpse into someone else's life with chronic illness. Some are Day in the Life videos, capturing a single day, and others, like the Chronically Jenni Weekly Vlogs I highlighted in that earlier post, cover more time.

What I find interesting and inspirational about these kinds of videos is their honesty and authenticity. As opposed to what you normally find online and on social media, these chronic illness videos almost always show the unvarnished truth, in this case about what life with chronic illness is like: the good, the bad, and the ugly. I find it comforting to see someone else do something small, like meet a friend for lunch or go to a store, and then have to lie on the couch afterward--I feel bad for them, but it means I'm not alone! There's comfort in community, in knowing that others face similar challenges as you do ... and are managing their own version of life and happiness.

So, for all of these reasons, I recorded my own Day in the Life with Chronic Illness video. You can watch it on YouTube at the link (and be sure to "Like" and leave a comment, if you want), and check out the Notes below the video on YouTube. And I will also embed the video here:

As I explain in the introduction to this video, I recorded it on a day when my husband was out of town (a rarity these days!) but otherwise, it was a pretty typical day for me. I wasn't crashed, and I was able to manage small bits of activity, with periods of rest in between. I tried to include everything in my daily routine, to give you a glimpse into my life with ME/CFS, Lyme, and OI (POTS and NMH) and the many kinds of self-care that help me. Since I enjoy the honesty and authenticity of others' videos, I tried to give you the same thing here ( I even started recording when I first woke up!).

Finally, as I mention in the video and in the notes below it, I am only able to manage the level of activity and functioning shown in the video because of the treatments I have found over the past 19 years that have helped both me and my son to feel better, tolerate more exertion, normalize our immune systems, prevent and lessen crashes (flare-ups), and overall improve our quality of life. For more information on Effective Treatments for ME/CFS (most of which are readily available worldwide and inexpensive), click on that link to the page here on my blog and/or check out the Notes below the video on YouTube.

 

And I would love to hear about YOUR life! What is similar or different than mine? What things help you to manage life with chronic illness?

Tell me about your own daily life in the comments below.

TV Tuesday: Big Sky

I love fall! Besides the perfect, cooler weather after summer's high heat and humidity and the beautiful colors of fall, lots of our favorite TV shows are back with new seasons! One of the shows we have most looked forward to, Big Sky, has just returned with its 2nd season. This mystery/thriller just gets more and more twisty, with surprises in every episode! To avoid any spoilers, I will just focus on the beginning of season 1 in my description.

As the title suggests, Big Sky is set against the gorgeous natural backdrop of Montana's mountains, forests, and rivers, but what's happening here is neither pretty nor natural. Two women and best friends, Cassie (played by Kylie Bunbury) and Jenny (played by Katheryn Winnick), run their own private investigator business in Helena, MT. Jenny is married to Cody, played by Ryan Phillipe (a local Delaware native!), and they have a teen son named Justin, played by Gage Marsh. In the first episode, Justin is waiting for his girlfriend and her sister to drive in from out of town for a visit. The two sisters, Danielle (played by Natalie Alyn Lind) and Grace (played by Jade Pettyjohn) are shown in their car, singing along to music and enjoying their road trip. Then disaster strikes as the two young girls are abducted on a deserted highway. Justin alerts his parents that they never showed up and aren't answering their phones, and soon both the police and Jenny, Cody, and Cassie are searching for the girls and investigating. Montana State Trooper Rick Legarski, played by John Carroll Lynch, is brought in to help with the search, but he doesn't seem worried and explains that lots of young women go missing from this area all the time. Soon, another young woman, Jerrie (played by Jesse James Keitel), is kidnapped from a truck stop by a creepy guy named Ronald, played by Brian Geraghty. And the twisty tale is off!

This is a tense and suspenseful story, with plenty of surprises you will never see coming. The acting is all top-notch from this ensemble cast, and the writing is excellent. The plot is classic thriller, with plenty of action and suspense in every episode. We have just started the newly begun second season, and I couldn't tell you anything about it without giving away all kinds of spoilers from season 1--a lot happens in every single episode, to keep you guessing (and watching). Oh, and it's got a great soundtrack behind the action, too! We've been waiting for this new season to come back, and this compelling, gripping show has already shocked us and taken us by surprise, in the first episode of season two. This is one of our favorites these days, in part because it doesn't fit the typical mold. Highly recommended for mystery/action/thriller fans.

Big Sky is currently airing on ABC on Thursday nights or you can catch it On Demand or streaming on Hulu.